Recent Profile Visitors

Thank you for replying.
Yeah, we, actually and especially me, don't do well with high glycemic index foods. So I have to maintain a kind of Paleo diet for myself. For example: corn has high glycemic index compared with quinoa and buckwheat or even wild rice. I try to avoid corn but I the budget is an impediment to eating a lot of meat and good fat proteins, fish, foul etc.
Definitely trying to eat as whole foods as is possible for us.

If you are reacting to some chemical then anything with a chemical solvent may be causing your reactions even the polish on your shoes, formalin in your bedding, furnature polish, traces of detergent on clothes and bedding, recently painted surfaces, traces of cosmetics. It took me several years to clean out the all the toxins from my home. You might also have molds growing in the structure of you house, especially the bathroom and kitchen.
Would you happen to recall the name of this book?
My daughter and I have this problem with gluten, dairy. I can't afford a totally G.F. diet. That is one of the drawbacks on having a really small income when one is on disability benefits...
Anything at all that is helpful would be a great benefit to my family.
Thank you.

Hello. Been a while since I've been here.
Not that I am necessarily better. But you've (the great peeps on this forum ! have been incredibly helpful and I know how to cope better, and I've made positive changes in mine and my daughter's lives.
So, as you can see I am writing to ask you about this new EVIL I've just recently discovered is a neruo toxin, used often in frozen sea foods: Sodium triphosphate. For example; I've been eating frozen fish with gluten-free herbs and spices, added veggies for years and also frozen shrimp with hot butter and garlic. YUM! With no *apparent* side effects. I am not sure anymore...A few days ago, I had good serving of shrimp and the usual, butter with fresh garlic and a bowl of green leaf salad with olive oil and Himalayan salt and again garlic lol (a big fan of garlic here ) . Within an hour of eating, my abdomen was so bloated. I looked like I was pregnant and in my second trimester . Wow! ...Ok, I thought to myself: WHAT did I ingest with gluten or milk, that could be the cause for this?...Everything seemed ok, over the last few days.
So I had to read the ingredients of this shrimp. I guess something like instinct told me to do it. And BAM, I came across that thing: Shrimp, water, Sodium triphosphate. I did some searching online and did not find too much except that 'The United States Food and Drug Administration lists STPP as "generally recognized as safe." ' https://en.wikipedia.org/wiki/Sodium_triphosphate THIS means very little to me personally. NOT reassuring at all.
I found something which DID scare me: " Even though deemed safe for ingestion, this is one chemical you want to avoid if you've experienced reactions due to eating frozen fish. Check for seafood products labeled as "dry" which means they have not been contaminated with the chemical. Food products labeled as "wet" have usually been treated with sodium tripolyphosphate.STPP, is a suspected neurotoxin according to the National Institute for Occupational Safety and Health’s (NIOSH) Registry of Toxic Effects of Chemical Substances. Food-grade STPP may cause acuteskin irritation, and prolonged contact with skin should be avoided. STPP is listed on the U.S. Environmental Protection Agency’s Federal Insecticide, Fungicide and Rodenticide Act as a registered pesticide and it is also registered as an air contaminant under California’s Occupational and Safety Health Act. The material safety data sheet lists STPP as toxic to the lungs with prolonged exposure having the potential to produce organ damage. This neuro toxin also has the ability to cause internal inflammation from those suffering from autoimmune diseases. Inflammation leads to painful flare-ups." From this site: http://www.yourfibrosupport.com/fibro-relief-blog/side-effects-of-frozen-seafoodtreated-withsodium-tripolyphosphate
It seems that there is one more evil to avoid. It's very hard to eat healthy, when you are on disability. It really is upsetting that even frozen fish which some of them I actually CAN afford, now are off the menu. The list just keeps getting smaller. I would like to point out that I have Candida, so it also means I can't eat things like Lentils or beans and the other gluten-free grains by the bucketfuls. I need to maintain a Paleo type diet. So, that's not cheap. We always have a lot of eggs at home and tuna and what meat I can afford, what is on sale, etc.
Been considering looking into free range meats and so on but that's not cheap. So, if I go that route, I'd have to split it with a person or two and probably buy a large freezer. Oh god. Just thinking aloud here...
I'd really appreciate any and all comments and suggestions.
Thanks very much for being so kind, L.

A young man of 23 is in hospital with Venous compression syndrome ( and I am not sure whether it is Paget–Schroetter syndrome, Nutcracker syndrome or May–Thurner). I know that this is a rare condition and these syndromes are usually seen in young, otherwise healthy individuals,
Please note he suffers from IBS, is slim/ skinny, and cancer runs in his family, in men. (I do not recall if it is colon or prostate. I know that both his father and uncle did or do suffer from it.)
The individual DOES consume gluten, and no testing has been ever conducted to determine whether he has the sensitivity to Glutens, or more serious affect such as Celiac.
But since Gluten (sugars) atrophy cells and tissue, I have to pose this Question to this community please.
Thanks so much for your time,
L.

Hello Forum members : So my daughter who has been on the Gluten Challenge for about 8 weeks now, and we want to do the Comprehensive panel. -tTG IgA and tTG IgG -DGP IgA and DGP IgG -EMA IgA -total serum IgA and IgG (control test) -AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests We are not having any luck with a clinic that does all of these tests. I would be more than grateful if you can tell me which of these two Panels is more complete. Sorry , I do sound probably ignorant (and in these matters I am just beginning to learn ) and I am in desperate need of assistance. PANEL 1- (free clinic) -immunoglblulin GAM (IgA, IgG, IgM) -CRP -ESR (He also suggested the following tests: ALT, Alk phosphate, Vit B12, Ferritin.) PANEL 2- (Paying clinic) 1. Deaminated Gliadins IgG & IgA (DGP IgA) 2. Anti-Tissue transglutaminase IgA(tTG) 3. Total IgA (control test) we don’t offer total IgG as part of this panel ' 4. ESR I didn’t recognize AGA IGA and AGA IgG' was what the lab technician told me. Thank you so much, L.

Ok I have an update from one of the lab technicians, in response to my letter to him. ' I have added the abbreviation to our test menu to make it more clear to you. (I didn’t recognize AGA IGA and AGA IgG) We offer EMA separately it cost $71.26 Celiac disease Panel (Panel 60): 1. Deaminated Gliadins IgG & IgA (DGP IgA) 2. Anti-Tissue transglutaminase IgA(tTG) 3. Total IgA (control test) we don’t offer total IgG as part of this panel ' '

Thank you and likewise pardon my bold and not bold because as you said, they have modified this format. I appreciate your feedback. I just off the phone with our family DR (GP) and he maintains that the former test, it is sufficient.. and when I did ask if he knows of a private clinic that does the 'comprehensive gluten panel' testing he basically parroted back the words, re any walk in lab is adequate. So much for that... The three hospitals all have same policy: must be patient in order to have use of their labs (grrrrr!) One hospital is having some special admittance policy of new patients (wish some special criteria? not sure what that is even..) and I left them a comprehensive, polite message and I pray they will take on my daughter; as we just need a DR to facilitate the Gluten testing. I am facing a quandary, I am not sure how to resolve. I left a message at a prestigious (think $$$) clinic; well, they take insurance ( I have none, as I am on disability benefits). Most things (including visits) are not covered by our provincial health card there. So, I want to see 1- How much is the preliminary (unnecessary) consult and 2- what kind of and how much do the Gluten panel tests cost there. My daughter is FED UP with feeling terrible and as she puts it ' dumb' (she is in school) , etc. So really she just wants in OVER WITH (so do I, poor kid). At worst she will have an incomplete Gluten blood panel done: and that really greatly irks me, because we are a first world country and why should it be a problem, if i pay for these test to have the done? We need all the possible comprehensive answers we can get, she deserves that and so do I. My daughter never heard voices, however, she in the past heard what she described as whispers, which have abated since we try had to be as gluten-free as possible. And only in our former apartment (odd); maybe it was neighbors? Not really sure. But of course neurological issues are so prevalent with gluten consumption it is scary. I hope so too, that the Canadian lady you mention, NVSMOM, could pitch in here. Thank you, L.

So we have some updates I would like to report and again to ask for your advice, dear forum members: My daughter is on the Gluten challenge for approx 7+ weeks and she is very eager to have it done with, and so am I ! When I presented all of the tests that Cyclinglady showed me, the DR at the walk in clinic said they only do -immunoglblulin GAM (IgA, IgG, IgM) -CRP -ESR He also suggested the following tests: ALT, Alk phosphate, Vit B12, Ferritin. The Dr. Prescribed for her Naproxen (which she did not fill out). He said the rest of the test are to be performed at hospitals. Unfortunately, it seems this is not as straightforward as i had thought. The DR who refers you to the lab at said hospital, must have working privilege at that hospital. I have called and left messages explaining we need a pt DR for this very reason and we have a steady GP (who does not have privileges at the hospitals), and could they please make an exception etc, etc. Now I wait for a call back. Ok so , next is to tell you that one homeopathic clinic, it sent me a list of tests they can do : Celiac disease Panel (Panel 60): Deaminated Gliadins IgG & IgA, Anti-Tissue transglutaminase IgA, Total IgA. The tests at the lab are for money but i am ok to pay, i just want her to be done with the suffering and find out the results already. But again, the complications re the naturopathic clinic: must have a thorough consult with a DR there, and if they recommend it, then we can get the tests...Sorry, this is just NOT ACCEPTABLE TO ME. Can someone please have a look at the two panels of tests and offer an opinion if this is sufficient or if I should still insist on the entire panel as suggested. (In the astounding, and really EYE opening and sobering book 'Grain Brain', by Dr. David Perlmutter, he states that (and this is news to me re the 12 sub units) 'A person may be sensitive to either of these proteins [found in gluten: glutenin or gliadin; italics mine] or to one of the twelve different smaller units that make up a gliadin. Any of these could cause a sensitivity reaction leading to inflammation.' Thank you so much, L.

Thank you very mcuh !
We will request or if we must, insisit, on them all
Really appreciate yours and others' imput,
this is overwhelming and yes, scary.
Plus we are moving,
so as in life,
timing is hardly the best

Dear Cyclinglady , I would like to run this by you one more time so I know which tests to request of the Doctor.
My daughter is going in a few days.
Do I request all of the tets you mentioned,
or should I leave out the last one?
*-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests*
Thank you so much.

Thank you very much for the links, and your help cyclinglady.
It is greatly appreciated.
Now it is to see what happens once the test results are back.
And, I am so concerned of the reactions to her glutening herself .
I wish you a happy Summer and happy trails !
L.

OK sorry , one more question here:
To have a Gluten test done properly, my daughter must be on it at least how many weeks?
I am confused because, I get anywhere from 3-12 weeks, depending on what source I go to.
Thank you again.

I really appreciate that cyclinglady
(my bike is many times my salvation
Thanks very much.
AI stuff is a real ..ummm " " ...you know?
Not very nice at all.
Happy Summer and, thank you for the tip re NVSMOM
L.

Can you please tell me which Celiac tests are mandatory, besides the dreaded biopsy?
According to this book the doctor suggest these ones as well :
1-Cyrex array 3
2- Cyrex array 4 (he sites this as optional)
I know that the standard blood test run by my GP will be very limiting.
So, I probably need a referral to a hospital in order to get the entire panel done.
Hopefully, the Provincial health insurance will cover them at the hospital.
Thank you